Today Jim had a clinic and a wound care appointment. I believe the Geek Squad is needed at clinic because we sat for 2 hours waiting for Jim to be called back to speak with the nurse and doctor because of an apparent switch to electronic medical records over the past 2-3 weeks, so everyone is still learning the system. I can only imagine how long it takes to add 10-12 medications per patient into a system but wow I have NO patience. They told us that they are having significant difficulty with record carry over so they are having to manually input most of their information. So, after many games of solitaire, words with friends, and jewels on my phone I lost my patience and entered a state of euphoria right in time for them to call Jim back. Unfortunately I do not have many lab numbers to report because with the electronic medical record change they sent Jim's labs off to an outside lab and we will not know the results for approximately 2-3 days. Hopefully this will get fixed by the next time Jim has an appointment so we will have the numbers that day. We did find out that Jim's creatinine was at 1.6 though so this is good news. The nurse practitioner told us today that Jim's range will probably be between 1.4-1.8 and that is where he will remain. Other good news is that Jim is going to get to wean off some of his medications, not the anti-rejection, but some of the stomach meds including Reglan and Protonix, these will become as needed. He will always be on some medication but it is exciting to be able to take some of them away.
Wound update- They are now only utilizing the wound vac on the middle wound. They slapped a very sophisticated "bandaid" on the other two wounds. The physician took at a look at the middle wound and is very happy with the progress it is making. So far the vac is much quieter- maybe we will be able to sleep with less gas noises coming from a charging vacuum between our two pillows.
Prayer Requests: Labs remain good- little lower creatinine would be great (but I don't want to be greedy), peace and support to the donor family,wounds heal quickly
Bible Verse: "Give thanks to the Lord for He is good and His love endures forever." Psalm 118:1
Monday, February 28, 2011
Sunday, February 27, 2011
Anxiety...you are not my friend.
I haven't reported much lately because luckily there hasn't been much to report. Jim hasn't had any clinic appointments for the last couple of weeks so it has been relatively quiet in our house. He has had wound care 2x/wk with the wounds slowly but surely improving. They allowed him a short hiatus from the vac this weekend but sadly it will be going back on tomorrow. We do return to clinic tomorrow for our first appointment in 2 weeks thus the anxiety about what the labs will report. They will be looking at creatinine, anti-reject med levels, and pancreatic enzymes. I will be sure to write tomorrow and let everyone know how things went.
Prayer Requests: Labs look good, wound has improved, increased tolerance for Jim with his vac.
Bible Verse: "And He will be their peace." Micah 5:5
Prayer Requests: Labs look good, wound has improved, increased tolerance for Jim with his vac.
Bible Verse: "And He will be their peace." Micah 5:5
Thursday, February 10, 2011
Cautiously Optimistic...ahh, feels kind of nice!
Jim and I are going to be cautiously optimistic after today's appointments.
His labs came back with good news-
creatinine stayed put, pancreatic enzymes came back into the normal range, potassium and phosporus are behaving, and his red blood cell count is climbing which hasn't happened in...well... it has NEVER happened, at least not on it's own since I have known Jim. These are all very good things!
His glofil test results came back as well and I have googled and googled and have not found a lot of information on how to interpret the results so if anyone has more information on this than I, I would love to hear from you. This is my very embarrassingly elementary understanding of the results. Apparently for a person with 2 good kidneys, not transplanted a perfect score is 100 or above, for a 1 good kidney transplanted person a good score is 50-100, a person on dialysis is around 20, and below 20 you are placed on a transplant list. Jim's score was 103 corrected and 118 uncorrected. I am not sure what that means other than that they told him that they were very happy with these numbers. On the lab report there was an H next to the 118 meaning HIGH however Jim did not ask any questions about this H so I have to just relax and be cautiously optimistic.
Jim's small pot hole like incision is also improving. The top incision has decreased in depth to 2.0, the middle and largest has reduced in depth to 2.5, and the bottom remains superficial however still inside the vac drape. They told Jim today that he needs to expect to wear the vac for about another 3-4 weeks. I could not be happier that he is filling in so nicely. I was starting to fear that I would soon be able to see through my husband in three different places had the vac not come along.
They have reduced Jim's clinic appointments to every two weeks, which provokes a small anxiety attack in me. I realize that I am not the expert and although I would like to think I am I must again RELAX and remain cautiously optimistic! I think that the Lord keeps placing these circumstances and experiences into my path so that I will realize that He is truly in control and I that I should at some point get tired of trying to steer. Well the Lord should smile today because I do realize that He is in control, however it may take me awhile, as in a lifetime, to have the faith to not try to lead.
Prayer requests: labs remain stable, continued wound healing, comfort for donor family
Bible Verse: "He makes me lie down in green pastures, He leads me beside quiet waters, He restores my soul." Psalm 23:2-3
His labs came back with good news-
creatinine stayed put, pancreatic enzymes came back into the normal range, potassium and phosporus are behaving, and his red blood cell count is climbing which hasn't happened in...well... it has NEVER happened, at least not on it's own since I have known Jim. These are all very good things!
His glofil test results came back as well and I have googled and googled and have not found a lot of information on how to interpret the results so if anyone has more information on this than I, I would love to hear from you. This is my very embarrassingly elementary understanding of the results. Apparently for a person with 2 good kidneys, not transplanted a perfect score is 100 or above, for a 1 good kidney transplanted person a good score is 50-100, a person on dialysis is around 20, and below 20 you are placed on a transplant list. Jim's score was 103 corrected and 118 uncorrected. I am not sure what that means other than that they told him that they were very happy with these numbers. On the lab report there was an H next to the 118 meaning HIGH however Jim did not ask any questions about this H so I have to just relax and be cautiously optimistic.
Jim's small pot hole like incision is also improving. The top incision has decreased in depth to 2.0, the middle and largest has reduced in depth to 2.5, and the bottom remains superficial however still inside the vac drape. They told Jim today that he needs to expect to wear the vac for about another 3-4 weeks. I could not be happier that he is filling in so nicely. I was starting to fear that I would soon be able to see through my husband in three different places had the vac not come along.
They have reduced Jim's clinic appointments to every two weeks, which provokes a small anxiety attack in me. I realize that I am not the expert and although I would like to think I am I must again RELAX and remain cautiously optimistic! I think that the Lord keeps placing these circumstances and experiences into my path so that I will realize that He is truly in control and I that I should at some point get tired of trying to steer. Well the Lord should smile today because I do realize that He is in control, however it may take me awhile, as in a lifetime, to have the faith to not try to lead.
Prayer requests: labs remain stable, continued wound healing, comfort for donor family
Bible Verse: "He makes me lie down in green pastures, He leads me beside quiet waters, He restores my soul." Psalm 23:2-3
Monday, February 7, 2011
HELP!! I'm Drowning!
This is what Jim felt like today when he had to complete a glofil test. Apparently this test is the most accurate way to determine kidney function.
What the test entails is:
1st- Jim drinks a small amount of iodine mixed in diet coke (YUM) and they inject his with a readioactive dye.
2nd- Jim drinks 80 ounces of water within 30 minutes. After he drinks all of this water he uses the restroom and then they draw labs. (He is starting to get sea sick)
3rd-Jim drinks 2 more glasses of water. After this water, he waited for 30 minutes and is required to use the restroom again and then they draw his blood, again. (He is putting on a life jacket at this point)
4th-Jim again drinks one more glass of water, waits for 30 minutes, uses the restroom, and more blood is drawn. (He is now doggy paddling while seated inside the clinic)
All of this water and blood are to measure how fast his kidneys dispense the iodine that he initially ingested. We did not get any of the results today so we are anticipating to get these on Thursday. As you can imagine one of the side effects of this test is nausea, and you may have guessed that Jim did experience this plus a little more. (poor guy)
The labs they did pull prior to the test, showed creatinine again at 1.5, pancreatic enzymes improving with one remaining a little elevated however much improved from last week. The other levels we look at were close to normal. He will most likely require a procrit shot this week secondary to anemia.
When Jim made it to wound care he was so nauseous that he couldn't really watch what they were doing. Per the nurse' report the bottom wound has almost closed, the top one has decreased in depth by close to half, and the middle one is taking its time, but improving.
Prayer Requests: labs continue to stabilize, wound continues to heal, prayers of thanksgiving for such wonderful support and love
Bible Verse: "When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you." Isaiah 43:2
What the test entails is:
1st- Jim drinks a small amount of iodine mixed in diet coke (YUM) and they inject his with a readioactive dye.
2nd- Jim drinks 80 ounces of water within 30 minutes. After he drinks all of this water he uses the restroom and then they draw labs. (He is starting to get sea sick)
3rd-Jim drinks 2 more glasses of water. After this water, he waited for 30 minutes and is required to use the restroom again and then they draw his blood, again. (He is putting on a life jacket at this point)
4th-Jim again drinks one more glass of water, waits for 30 minutes, uses the restroom, and more blood is drawn. (He is now doggy paddling while seated inside the clinic)
All of this water and blood are to measure how fast his kidneys dispense the iodine that he initially ingested. We did not get any of the results today so we are anticipating to get these on Thursday. As you can imagine one of the side effects of this test is nausea, and you may have guessed that Jim did experience this plus a little more. (poor guy)
The labs they did pull prior to the test, showed creatinine again at 1.5, pancreatic enzymes improving with one remaining a little elevated however much improved from last week. The other levels we look at were close to normal. He will most likely require a procrit shot this week secondary to anemia.
When Jim made it to wound care he was so nauseous that he couldn't really watch what they were doing. Per the nurse' report the bottom wound has almost closed, the top one has decreased in depth by close to half, and the middle one is taking its time, but improving.
Prayer Requests: labs continue to stabilize, wound continues to heal, prayers of thanksgiving for such wonderful support and love
Bible Verse: "When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you." Isaiah 43:2
Sunday, February 6, 2011
Wrong...Right... I like Right!
What I mean from above is that on Friday they pulled the wrong labs for Jim. This is a little frustrating when Jim's parents drove all the way down here in the bad weather to take him to the hospital for his labs to be drawn since the clinic was closed again. The doctor called and reported that his prograff level was very low and I explained to her that she is probably correct since he is not on prograff. They also did not pull his pancreatic enzymes which is exactly why we wanted his labs to be pulled in the first place because his Monday level was dangerously high. When I spoke with the doctor I explained all of the reasons why these labs were incorrect and she said she would get them corrected and wanted him to return today for another lab draw. This time, after both Jim and I were annoyingly repetitive about what they needed to pull, they DID report the correct items. The doctor called us this afternoon and it looks like his creatinine was 1.5 and his pancreatic enzymes were back to normal!!! Jim's cyclosporine level (which is one of his anti-rejection meds that affect his kidney fuction) was at 180 which is a little lower than they would like so they increased this medication again. Needless to say Jim's medications change from day to day so it is never a boring day in our "drug" world.
Prayer Requests: Continued stabilization of his labs, patience for Jim and I, comfort for the donor family, and a WIN for Green Bay!!
Bible Verse: "Give thanks to the Lord for He is good and His love endures forever."
Psalms 107: 1
Prayer Requests: Continued stabilization of his labs, patience for Jim and I, comfort for the donor family, and a WIN for Green Bay!!
Bible Verse: "Give thanks to the Lord for He is good and His love endures forever."
Psalms 107: 1
Monday, January 31, 2011
And Again With The Bouncing
We had two appointments today- one at the transplant clinic and one for wound care.
1st- The transplant clinic appointment was bitter sweet. Bitter sweet because Jim's creatinine level went back down to 1.5!! YAY!! This in itself is great news, now let me try and explain the 2 reasons why it is bitter sweet. This creatinine level is directly correlated to a certain medication that he has to take. When the level of that medicine gets to low he has a higher risk of rejection, if it gets to high then it can be toxic to the kidney. Last week when we had the higher creatinine numbers his medication level was high. Today this medication level was too low, in turn putting Jim at a huge risk for rejection. They have increased the amount by 25mg in the hopes of preventing rejection. So...onto the second reason why it is bitter sweet, one of Jim's pancreas enzymes is off the chart high therefore raising a rather enormous red flag for his pancreas possibly rejecting. Is this number just random, directly related to the medication level being too low- or something else altogether, no one knows! They have scheduled him to come back in an extra time this week to check the level again on Wednesday instead of waiting until Friday. I am hopeful that by raising the anti-rejection med by 25mg it will stop the crazy pancreatic enzyme from doing anything else unnerving.
The 2nd appointment was his wound care/ vac change. This appointment went well. The bottom wound is starting to really heal up and is a much "prettier color." They have started using a material that contains silver and collagen. This dressing is placed into the wound beds and helps to speed up collagen production and prevent bacteria from growing. (Collagen is something the body makes when you are healing a cut/wound/scrape) I hadn't seen the wounds since last Monday and I am happy with how they are looking overall.
On a selfish note, I ask for prayers of hope and resilience. There are times when this process can start to get the better of you and although I know that we are on the winning end of this situation (I prayer for continued healing and peace for the donor family) it can still become overwhelming and exhausting. Jim has such a strong and calm demeanor but I feel that at times he is also becoming frustrated. I on the other hand, do not have this calm demeanor and I fear that it shows on my face eventhough I try really hard to be as strong as he.
Prayer Requests: Pancreas enzymes calm back down, kidney levels stay low, medication level evens out
Bible Verse: "For I know the plans I have for you, declares the Lord, "plans to prosper you, and not to harm you, plans to give you hope and a future." Jeremiah 29:11
1st- The transplant clinic appointment was bitter sweet. Bitter sweet because Jim's creatinine level went back down to 1.5!! YAY!! This in itself is great news, now let me try and explain the 2 reasons why it is bitter sweet. This creatinine level is directly correlated to a certain medication that he has to take. When the level of that medicine gets to low he has a higher risk of rejection, if it gets to high then it can be toxic to the kidney. Last week when we had the higher creatinine numbers his medication level was high. Today this medication level was too low, in turn putting Jim at a huge risk for rejection. They have increased the amount by 25mg in the hopes of preventing rejection. So...onto the second reason why it is bitter sweet, one of Jim's pancreas enzymes is off the chart high therefore raising a rather enormous red flag for his pancreas possibly rejecting. Is this number just random, directly related to the medication level being too low- or something else altogether, no one knows! They have scheduled him to come back in an extra time this week to check the level again on Wednesday instead of waiting until Friday. I am hopeful that by raising the anti-rejection med by 25mg it will stop the crazy pancreatic enzyme from doing anything else unnerving.
The 2nd appointment was his wound care/ vac change. This appointment went well. The bottom wound is starting to really heal up and is a much "prettier color." They have started using a material that contains silver and collagen. This dressing is placed into the wound beds and helps to speed up collagen production and prevent bacteria from growing. (Collagen is something the body makes when you are healing a cut/wound/scrape) I hadn't seen the wounds since last Monday and I am happy with how they are looking overall.
On a selfish note, I ask for prayers of hope and resilience. There are times when this process can start to get the better of you and although I know that we are on the winning end of this situation (I prayer for continued healing and peace for the donor family) it can still become overwhelming and exhausting. Jim has such a strong and calm demeanor but I feel that at times he is also becoming frustrated. I on the other hand, do not have this calm demeanor and I fear that it shows on my face eventhough I try really hard to be as strong as he.
Prayer Requests: Pancreas enzymes calm back down, kidney levels stay low, medication level evens out
Bible Verse: "For I know the plans I have for you, declares the Lord, "plans to prosper you, and not to harm you, plans to give you hope and a future." Jeremiah 29:11
Thursday, January 27, 2011
Still Bouncing
Bounce, bounce, bounce- Labs on Monday went a little worse- labs on Wednesday went a little better- so we continue to bounce. Since he bounced to the "better" side on Wednesday the doctors allowed him to go back on his blood thinners. His pancreatic enzymes also went up a little bit with one of them remaining in the normal range and one slightly higher so they are continuing to keep an eye on these as well. Jim and I are trying to take the "live day by day" approach which I think he is doing a much better job adhering to than I. We have weaned his predisone down to 12mg a day which is a huge decrease from the 20mg that we started at. The doctors have decreased a couple other medications as well which is appreciated. Needless to say he is still taking about 18 pills every morning and about 9 every night. We are very very blessed to have insurance and to have had such great support fundraising prior to the transplant. We don't go back to clinic till Monday so we have a couple of days to relax before drawing more labs.
The vac is going well for the healing and bad for the sleeping. Jim has to wear it 24/7 and charge it while he sleeps. This means that the vac sleeps in between us while being charged. While this charging is happening it has to stay standing up which is slightly difficult since it is an oval shape- To make the standing up possible it is stuck between our two pillows while it makes all kinds of interesting noises. (needless to say the first night I leaned over and hit my husband several times before I realized that the noises were coming from this little machine.) He is getting the dressing changed 3x/wk downtown. When he had it changed on Wednesday they reported that both of the larger wounds had reduced in depth from 3cm down to 2.5!! This is great news considering we spent the last 6 weeks just getting deeper. (I like to think that my being a little pushy isn't always so bad even when I am talking to a surgeon)
On a side note we would love for everyone to keep our dear friends the Andersons in your prayers. They and their son have been enduring many trials and tribulations lately so if you could lift them up to the Lord asking for strength we would really appreciate it.
Prayer requests: Wound continues to heal, labs improve and return to baseline, the Anderson Family, and peace for the donor family
Bible verse: "The Lord is my strength and my shield; my heart trusts in Him and I am helped. My heart leaps for joy and I will give thanks to Him in song. " Psalms 28:7
The vac is going well for the healing and bad for the sleeping. Jim has to wear it 24/7 and charge it while he sleeps. This means that the vac sleeps in between us while being charged. While this charging is happening it has to stay standing up which is slightly difficult since it is an oval shape- To make the standing up possible it is stuck between our two pillows while it makes all kinds of interesting noises. (needless to say the first night I leaned over and hit my husband several times before I realized that the noises were coming from this little machine.) He is getting the dressing changed 3x/wk downtown. When he had it changed on Wednesday they reported that both of the larger wounds had reduced in depth from 3cm down to 2.5!! This is great news considering we spent the last 6 weeks just getting deeper. (I like to think that my being a little pushy isn't always so bad even when I am talking to a surgeon)
On a side note we would love for everyone to keep our dear friends the Andersons in your prayers. They and their son have been enduring many trials and tribulations lately so if you could lift them up to the Lord asking for strength we would really appreciate it.
Prayer requests: Wound continues to heal, labs improve and return to baseline, the Anderson Family, and peace for the donor family
Bible verse: "The Lord is my strength and my shield; my heart trusts in Him and I am helped. My heart leaps for joy and I will give thanks to Him in song. " Psalms 28:7
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